Thanks for posting this. I actually thought the article was excellent, especially the summation:

An estimated one million Americans suffer from chronic fatigue syndrome. Countless studies have documented immunological, neurological and other physiological abnormalities. Despite the name of the illness, patients have long reported that simple fatigue is not their cardinal symptom but rather what researchers call postexertional exhaustion a profound depletion of energy after even minimal exercise or activity.

Recently, a panel of top researchers proposed a new definition of the illness that requires the presence of postexertional exhaustion, rather than the six months of unexplained fatigue required under the standard definition.

The group also recommended changing the name to myalgic encephalomyelitis, a virtually identical illness long recognized by the World Health Organization.

Dr. Nancy Klimas, an immunologist at the University of Miami, said that the two-year debate over M.L.V.s had raised the profile of the disease and brought attention to the likely role of infectious agents in chronic fatigue syndrome.

Internationally recognized experts have looked at the immune data and concluded that there very well may be a pathogen or pathogens involved in the persistence of this illness, Dr. Klimas wrote in an e-mail message.

I don't think he's talking about our disease?! The headline says Chronic Fatigue, I was diagnosed with CFS not CF, get your story title/straight!

GG

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GG, usually the author of the article doesn't write the headline. Newspapers usually have people other than reporters whose job it is to write headlines. I'm not saying you shouldn't object to the headline, just assign blame to the right place.

Lets just hope this is genuine improvement of awarness, and not merely meant ot "Buy us off"
ie, "pat the cripple on the head, and assure them everything is ok and leave them to rot thinking you care, which you don't, it's all a misdirection to keep them form making a scene"

yes, I am that much of a cynic (and what's worse, I know all to damn well how the system can and does work, so I have grounds for such cynicism, lol.)

GG, usually the author of the article doesn't write the headline. Newspapers usually have people other than reporters whose job it is to write headlines. I'm not saying you shouldn't object to the headline, just assign blame to the right place.

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Thanks for the reminder, but I don't think this is good excuse for a Major newspaper in the US. I think it speaks poorly of the paper, which I do not really care for as it is.

'Dashing the hopes of many people with chronic fatigue syndrome, an eagerly awaited study coordinated by government health agencies has not confirmed a link between the illness and a virus called XMRV or others from the same class of mouse leukemia viruses.'

'Results from another government-sponsored study of M.L.V.s, with a much larger sample size, are expected early next year. But Thursdays report appeared to leave little room for continued optimism. '

For what its' worth I agree with that. Personally, I don't see how/why Lipkin should even proceed with his study. But I guess the money has been found and unless he is persuaded not to continue then he will. The chances of him finding 'X' appears remote but it depends on whether he is looking for 'XMRV' or anything else.

'These results indicate that current assays do not reproducibly detect XMRV/M.L.V. in blood samples and that blood donor screening is not warranted, reported the new study, written by researchers participating the Blood XMRV Scientific Working Group. '

To me that begs the question how on earth people can have been tested and found 'positive' for 'XMRV' in the first place. But then I am only a patient and not a scientist.

'But the scientists also said they could not definitively exclude the possibility that levels of viral markers in the blood might fluctuate over time and become undetectable at certain periods.'

This seems daft. I get the concept that if it ain't in me blood it could be hiding in me tissues - but the original study by Lombardi and all them test kits from WPI were about detecting 'XMRV' in BLOOD. An explanation would be great to hear sometime.

'Also on Thursday, researchers from the original study linking XMRV to chronic fatigue syndrome, which was published in Science in October 2009, retracted a portion of their data but not their conclusions because of evidence of contamination in one lab involved in the study. '

I am reading at the moment (in my slow 'CFS/ME-way' the actual BWG Paper and this partial retraction), but.... How the heck can they 'only' partially-retract? If only because of the name 'XMRV' the paper should be pulled. Seems daft to me and to Prof Racaniello et al after listening to his latest podcast just now.

'Vincent Racaniello, a microbiology professor at Columbia University who has covered the controversy on his popular virology blog, said the XMRV/M.L.V. hypothesis was now dead. Its clearly time to move on in the study for the origin of this disease, he wrote in an e-mail message. '

I couldn't agree more. IF something else is going on with regard to retorviruses and 'CFS' cohorts then let's see a NEW paper that establishes a link. But for now... move on to something else, like for example....

'Recently, a panel of top researchers proposed a new definition of the illness that requires the presence of postexertional exhaustion, rather than the six months of unexplained fatigue required under the standard definition.

The group also recommended changing the name to myalgic encephalomyelitis, a virtually identical illness long recognized by the World Health Organization. '

...PROVING that Myalgic Encephalomyelitis is the most appropriate name for a condition that is exemplified apparently by this PENE-thing which as yet is an UNPROVEN term invented to support an UNPROVEN criteria.

Let's not jump from the flying pan into the fire. PROVE that inflammation (clinically defined inflammation) of the BRAIN and/or SPINAL CORD along with 'muscle pain' is apparent in a patients diagnosed with 'CFS' or 'ME' as they exist presently.

PROVE that 'ME' is the best and most appropriate nomen for an illness that affects all of those patients currently diagnosed. PROVE that PENE (as it is defined in the ME-ICC) is real - clinically.

We seem to be jumping from possibly one cause for all those diagnosed to a new definition that (without tests) simply sounds good and is likely to be more accepted by patients than Chronic Fatigue Syndrome.

There is no reason why the symptoms of my condition cannot be clinically validated and THEN a criteria constructed around them. I do not see why a criteria without tests and a valid reason for the name should be even published.

What if clinical tests do not support the nomen Myalgic Encephalomyelitis? I mean they haven't so far. What if PENE proves unsubstantiated or applies clinically (if such a thing is possible) to so few patients, that this whole 'new' criteria will not replace the existing one but has to stand alongside it (which is what I thought was happening anyway, I didn't think it was a replacement, but hey-ho)?